Hi all,
Well.....I will be put on the transplant list, BUT under inactive status. Inactive means that if a kidney that matches me comes available....I will be overlooked right now. I can accumulate points though.
They want to put me on Cellcept. I read some of the posts on here. I guess I will start MOnday taking it and they want to see if my titer goes down???? They use this for people after transplant to help with rejection. They want to see how my body reacts to this drug and see if it "works" for me.
Who has used it and does it help you with your titer and Sjogrens. What exactly is the titer? I kinda know...but it is confusing to me. I may be on it for 1 onth or 3 months....depends.
Thanks!
Vicky
www.sjogrensandme.blogspot.com
Vicky I am so glad to hear you are on the list. I hope the Cellcept helps with your titer. I have no idea what it is, but I'm sure one of members with nursing background will be able to help you.
Take care and good luck with both the transplant possibility and the Cellcept.
Hugs, Pooh
Hi Vicky
I'm so pleased to hear that you're on the transplant list. How do you accumulate points? I hope it doesn't mean that feeling worse becomes a good thing!
There are a few of us lurking here who are on Cellcept. I think I'm probably the newest because I've only been on it for 5 weeks, which means I can't help much with what effect it has on SjS symptoms or blood results. It took a few days to get through the initial symptoms of nausea and odd tummy, but it really wasn't too bad. You need to take care of yourself and avoid ill people/crowds etc because your immune system will be compromised. I thought I was being really careful but I've already had two courses of antibiotics because of infection. For the first month you have weekly blood tests to check - but you're probably having loads of blood tests anyway. And you're probably avoiding crowds etc too!
The main side effect I've had is that I'm freezing cold, from deep inside; a bit as though my spine has turned to ice. I just hug a hot water bottle all day. Other people have felt really hot so it obviously affects internal temperature controls differently for different people. I'm due to double my dose next week so it will be interesting to see what happens next.
Do message me if you'd like to discuss adjusting to Cellcept over the first few days of starting it. No question too small!
Chana x
Well, at least it sounds like forward movement, and that's always a good thing!
The only titre I can think of is the measurement of antibodies, sometimes quantitative with an actual count, but sometimes qualitative, given in a titre. My guess would be that they are looking for a reduction in antibody formation from the Cellcept.
Thanks Pooh, Chana, and Linda!
I go today to see my hometown nephrologist and be put on cellcept. I am a little nervous about the whole thing, but glad to be moving forward. I work in a hospital....not clinical, but I do help parents learn to use a nebulizer at home with their sick kids. Unfortunately......we are seeing a lot of RSV come in. I wonder if I should wear a mask or just wait and see what happens. Any ideas? I guess I'll need to discuss this with my Doc today.
Chana....I may be emailing you soon! Thanks!
Take Care!
Vicky